Throwin up White Flag on Rituxan Also! :(

Sorry for the ones who have had a bad reaction to Rituxan. They are finding that this drug is toxic to both the heart and lungs. Unless you are a quick responder, I can't see being able to continue these infusions for years. I totally understand taking the chance with this drug and needing some relief. I've been there.

We need drug trials done properly and payed for by the drug companies, instead of being hung out there alone to try and figure how to continue to endure this illness. This is what the those reading this thread should pick up on. Our lives are no less precious than those with RA, MS, lupus, etc.

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I couldn't agree more! We need the big bucks like cancer patients get. This disease is debilitating in a way that no one truly understands until they get it. But it needs to get out there. I pray that through film or exposure other ways that the word will get out that we deserve help. We are being tossed aside because they don't even know we exist.

My friend was at UCLA medical school and I asked a person at her party a future doctor what his thoughts were on CFS? His response: "What's CFS?" So I tell him the other name. He says oh I haven't heard of that one. Yikes! That means new doctors aren't being taught to see this disease either. I met with the friend who is now a doctor to get her take on things she told me to see a psychiatrist. It makes me sad because it doesn't bode well. CFS is rare in the minds of the medical community it is hard to be seen when no one wants to look.